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Gluten Sensitivity Gene...years Of Pain?

IrishEyes

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IrishEyes Newbie
IrishEyes
Posted

Hi Everybody..This is my first posting and have a lot of questions on how having the gluten-sensitivity gene actually translates into real autoimmune symptoms. I have been on the autoimmune misdiagnosis roller coaster for about 4 years now. What started as red inflamed eyes turned into hip pain, extreme joint pain, feet and hand pain, skin rashes and anxiety. I have been told I have lupus, Sjogren's, adrenal fatigue etc.. My labs show a positive ana titer and a low serum 4. But my rheumy can not come up with an actual diagnosis because my labs are constantly changing.

Over the past 6 months I have become very anxious and have had bouts of severe fatigue. I decided to go see a DO in the hopes of getting some answers..any answers! I was on humira for 2.5 years until it stopped working and now I am on Remicade infusions every 6 weeks. I hate these meds, but can't function without them! This new doc believed a lot of my symptoms could be from a sensitivity to gluten so he tested me for the gene...it was positive. My question is could all or any of these symptoms really come from being positive for this gene? I do have some GI issues but they would be way down on the list of complaints. Today would be day one of the gluten-free diet and I would like to know there is some hope that this could actually help.

Thanks in advance for any input, advice or experiences shared...

Irisheyes

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GFinDC Veteran
GFinDC
Posted

Hi,

I think the short answer is YES!

There are lots of varying symptoms you can get from celiac. Gluten sensitivity probably has the same list, although there isn't a lot of info on it. You can search for celiac associated condition or celiac related condition and find lists of other autoimmune diseases that tend to occur more frequently in people with celiac. There is a wide range of symptoms that people on this board have.

The gene test can show genes, but it doesn't diagnose celiac or gluten intolerance. You would need to get a celiac blood panel to test for celiac, and you need to be eating gluten for that test to work. There is also Enterolabs testing, which might help.

If you want to get any blood tests done, keep eating gluten. The Enterolabs stool tests can be done after you are off gluten for a while.

jerseyangel Proficient
jerseyangel
Posted

What started as red inflamed eyes turned into hip pain, extreme joint pain, feet and hand pain, skin rashes and anxiety.

Hi IrishEyes, and welcome!

I had all of those symptoms in addition to some gastro problems before being diagnosed. Not all Celiacs have GI issues though--that's one of the things that confuses people. Just from being around here, I see folks who have no stomach/digestive symptoms until they go gluten-free, then when they consume gluten again (usually accidently as part of the learning curve) they begin to get them.

I think you're on the right track--best of luck and be sure to let us know how we can help :)

nora-n Rookie
nora-n
Posted

Yes, all kinds of pains in the legs and arms and other places are not uncommon with celiac, and they are also listed in the symptom lists.

Some have positive ANA tests without actual lupus or anything, just from gluten.

michelley65 Rookie
michelley65
Posted

Hi Everybody..This is my first posting and have a lot of questions on how having the gluten-sensitivity gene actually translates into real autoimmune symptoms. I have been on the autoimmune misdiagnosis roller coaster for about 4 years now. What started as red inflamed eyes turned into hip pain, extreme joint pain, feet and hand pain, skin rashes and anxiety. I have been told I have lupus, Sjogren's, adrenal fatigue etc.. My labs show a positive ana titer and a low serum 4. But my rheumy can not come up with an actual diagnosis because my labs are constantly changing.

Over the past 6 months I have become very anxious and have had bouts of severe fatigue. I decided to go see a DO in the hopes of getting some answers..any answers! I was on humira for 2.5 years until it stopped working and now I am on Remicade infusions every 6 weeks. I hate these meds, but can't function without them! This new doc believed a lot of my symptoms could be from a sensitivity to gluten so he tested me for the gene...it was positive. My question is could all or any of these symptoms really come from being positive for this gene? I do have some GI issues but they would be way down on the list of complaints. Today would be day one of the gluten-free diet and I would like to know there is some hope that this could actually help.

Thanks in advance for any input, advice or experiences shared...

Irisheyes

michelley65 Rookie
michelley65
Posted

I am also trying the gluten free diet..actually started it last week in hopes that it will help with my muscle and jiont pain...along with my gastro problems.I havent noticed a difference in the muscle and jiont pain yet,but Im sticking to it anyway.My doctor is sending me for bloodwork for celiac,and I was told I dont have to eat gluten for it to be accurate...but everyone else says I do have to eat it...Im so confused!!

nasalady Contributor
nasalady
Posted

I am also trying the gluten free diet..actually started it last week in hopes that it will help with my muscle and jiont pain...along with my gastro problems.I havent noticed a difference in the muscle and jiont pain yet,but Im sticking to it anyway.My doctor is sending me for bloodwork for celiac,and I was told I dont have to eat gluten for it to be accurate...but everyone else says I do have to eat it...Im so confused!!

Your doctor is wrong. You have to eat LOTS of gluten until after all tests are done (including bloodwork and intestinal biopsy) if you want accurate results. The more gluten the better!

You can go on the gluten free diet the day after testing is done....you don't have to wait for the results! :)

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nasalady Contributor
nasalady
Posted

Hi Everybody..This is my first posting and have a lot of questions on how having the gluten-sensitivity gene actually translates into real autoimmune symptoms. I have been on the autoimmune misdiagnosis roller coaster for about 4 years now. What started as red inflamed eyes turned into hip pain, extreme joint pain, feet and hand pain, skin rashes and anxiety. I have been told I have lupus, Sjogren's, adrenal fatigue etc.. My labs show a positive ana titer and a low serum 4. But my rheumy can not come up with an actual diagnosis because my labs are constantly changing.

I do have some GI issues but they would be way down on the list of complaints. Today would be day one of the gluten-free diet and I would like to know there is some hope that this could actually help.

Thanks in advance for any input, advice or experiences shared...

Irisheyes

Hi Irisheyes,

As previous posters have said, the short answer is YES. Celiac disease is a very complex disorder; most people think it only involves the GI tract, but researchers have found that celiac causes the body to produce antibodies against bone, skin, and even the brain!

Some or hopefully all of your symptoms may (eventually) go away on the gluten free diet. Like many of us, you may be sensitive to more than just gluten....other possible culprits include dairy, soy, corn, etc. Some are so ill when they start the gluten free diet that it can take months or even a year or two before all of their issues go into remission.

This has been mentioned before, but I will reiterate: if you want to be ACCURATELY tested for celiac disease, i.e., have blood tests for the autoantibodies, etc. that go with the disease, and/or an intestinal biopsy, you MUST continue to eat lots of gluten until all testing is done. You can go gluten free AFTER you finish the tests.

Now, as to the link between celiac disease and other autoimmune conditions, medical researchers have discovered that untreated celiac disease can actually "open the door" for other autoimmune disorders to develop. Here is a great article on how this happens: Open Original Shared Link.

Many of us have multiple autoimmune diseases, in fact the older we are, the more of them we have, as a rule. Take a look at the list of autoimmune diseases in my signature; I wasn't diagnosed with celiac until I was 52. :(

Of course, I'm a bit complicated because I also have Lyme disease....Lyme disease can ALSO trigger autoimmune diseases and fibromyalgia. But I do blame celiac for at least half of my other conditions!!

I suspect, from your name, that you're either Irish or of Irish background. Me, too. :)

FYI, the Irish have one of the highest rates of celiac disease in the world. And they're no slouches at developing other autoimmune diseases either! The luck of the Irish at work, no doubt! :P

Remember to keep an open mind and do lots of research for yourself!! You may have more than one disorder there, that always makes things complicated.

Good luck with everything!

JoAnn

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